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Author
Topic: A little update here ! (Read 6245 times)

Its been a while since I posted on here but wanted to touch base with my AM friends to say hi as well as provide a bit of an update. Also I have a question for you all. Many of you I keep up with on FB and you already know my developing situation, but others do not.

I found out this past week that I have Hodgkin Lymphoma. The treatment for this type of cancer at a minimum will be several cycles of chemo with possible radiation. Tests are all done and I am in that 'waiting for results' period of time to determine the exact stage of development my condition has reached.

OK, question regarding my HIV treatment (Atripla) is this: Have any of you or are any of you aware of issues that chemo may have on HAART? One of my concerns would be if the nausea comes (during chemo), I am wondering if my daily dose of Atripla would remain strong enough in me so as not to create compliance issues. I will discuss this in detail with my ID Spec but was looking here too to see if any of you have ever gone through chemo while on HAART?

My lump (nicknamed it Mr Lumpy) was discovered in September and I wasted no time getting to doctors so they could take a 'look see'. Now my biopsy has been done (three lymph nodes removed) and the analysis shows my tissue stains for Hodgkin Lymphoma. Another fight underway shortly.... thank goodness I have more strength for this one than I did when initially diagnosed with AIDS.

Please... if you guys notice abnormally swollen lymph nodes, don't ignore it. Get it checked out. My hope is this is being caught in stage I or II (worst case). The good news is my VL is back to being UD.... but that slight trend of my CD4s going slowly down from mid 300s to 192 may be indicative of my body fighting cancer. Talk about an opportunistic piece of shit!

So... if any of you have had (or know information regarding) the experience of treating cancer while on HIV meds, I would love to hear from you.

Hi James . Im wising you the best and I want to thank you for your update here .

I was in chemo for a long while and never had any serious issues with nausea while on Atripla . I guess it all could come down to the chemo drug and dose but I was pleasantly surprised at how well I tolerated the treatments . I was in chemo for Kaposi sarcoma so it may not be a fair comparison .

I will be thinking of you and hoping for an update when you feel inclined .((( BIG HUG )))) .

Thanks Jeff. ABVD is the treatment I will take and I plan to start out w/o a port. My hope is that if I am catching this in stage I or II, I may only need 3 to 6 cycles which is one treatment ever 15 days for 3 to 6 months.

I am finding that the cost of cancer treatment makes HIV treatment seem like a bargain basement sale! So far just an outpatient surgery and tests alone are about as much as my 2 week stay in the hospital when I was being diagnosed with AIDS.

I wish a pill would cure HL but nope... gonna take bigger guns this time. I do plan to take the anti nausea drugs (strong ones) and of course anything that will keep the runs at bay too.

There is a support site for Hogies too but not nearly as many folks there (which is actually good when you think about it). Don't wish this crap on anybody!

The silver lining is that treatment for HL has a 95% success rate. It will do a number on your system though while in treatment.

I'm sorry to hear about the HL diagnosis. I am glad you found it early. Can I ask you where the lump is located? How did you discover it? Was it noticeable or was it something that of you weren't looking you would have missed?

I'm sorry if that's a lot of questions.Lymphoma is a common occurrence for people with HIV and with your experience we could learn more about the signs, etc.

Regarding the nausea, I hope it's not bad. Are you in a place that allows medical marijuana? It really does help with nausea and some other chemo side effects, including keeping your appetite and strength up.

I noticed in mid September a slightly swollen area in my right side arm pit when I was in the shower. It was getting ever so slightly larger by the day actually until it got to maybe about the size of my hand. This thing was totally painless but was obviously swollen.

I went into see my GP that next week and he initially put me on Bactrim for 10 days but also ordered an ultrasound. So at this point we are getting into late September and I move my ID Spec appointment up a week so I can discuss this with him too. His nurse setup an appointment with a surgeon who put me on his schedule for the very next day. A week after surgery my results were being presented to me and I had an appointment with my Oncologist setup. This past week I had my PET, CT, ECHO, and Pulmonary Function Tests done (all to determine the stage where I am) and plan to take my first treatment of chemo during that first full week in November.

This is all going rather fast! Its best to NOT waste time with cancer as you know. The only way I would have not noticed this lump would have been if I did not wash under my arms so it was very easy to spot. The PET scan will show if I have cancer in other areas where obvious swelling is not felt. Sooooo, I hope its early. I do know I wasted NO time getting into see doctors once I found this.

Please everybody...do not ignore swollen lymph nodes. Yea, not all are going to be cancer but do not wait and see if it all gets better for too long. If you do not see improvement, get it checked out!

Mom and I were just talking about you, Hopey! We're keeping you in our thoughts. We know everything is going to work out just fine.

Oh and Mom says thank you for the nice card you sent after Dennis passed away. You pleasantly surprised her at a very sad time.

We were planning to do the Christmas Show at the Merchandise Mart (Charlotte) in November and actually may still get up that way. If so, please consider joining us for dinner. We will be staying in the South Park area so I know its not too far from where you are. Thanks Mikie! Send my best to Miss Celia.

Here is a deal: By late spring of next year you will be dancing and I will be cancer free! Optimistic (yes) but not unrealistic. Thanks again.

I fully expect this (even if my dancing may be more of a gentle swaying I've had HIV+ friends get what you just found out about and though the chemo sessions can be rough they came out of it all just fine. Half of it is mental, so while you may expect some days of feeling down be aware of this and seek help when you need it -- family, friends, etc... and you can always call me or have a Skype session. And when I'm ill there's really nothing like hearing one's mother's voice even when you are an old man (yes, I am not ashamed to say so).

So I will hold you to our dancing session, and next time you travel up my way we'll do lunch somewhere fab, OK?

I love it! Thanks David. The HL support group had a member who posted... "be sure and take your mommie with you to chemo". My mother is a steel magnolia and she is determined to be right by my side (83 yrs old actually). She is the matriarch of our family as one may expect.

Thank goodness for the support of friends and family. Also, I find that I am deeply shaken by this but know that I have what it takes to fight. Honestly, the 2010 fiasco with AIDS will make this seem easier. I am not almost dead like I was back then so I am going into this fight with not only good odds, but MUCH more strength!

Hey Hopey! good to see you again round these parts. Sorry to hear about your diagnosis, you will be in my thoughts.

I was moms caretaker during her 2 year Chemo regimine and she rarely threw up, Of course like you say it all depends on what they are giving you. When she did get nauseated we had plenty of Phenergan and Zofran on hand. So get your doc to prescribe you one of these. Also they frequently put an anti nausea agent in with the chemo mix.

I do appreciate those of you who took a moment to respond here and via e-mail. It means more than you know to get even a short message expressing support and well wishes.

Today or tomorrow at the latest, I should find out the stage where my HL is and from what I gather, there should really be no negative affect on my HAART. That was a huge concern. My next appointment with my ID Spec is during the first week in November and its great that he AND my Onc will be closely monitoring me as I start and go through with chemo.

All the best to you all and thanks again for the good vibes, information, and support. Lets make it a great week!

I appreciate it Eric. The note from you put a smile on my face! I also enjoyed chatting with you this morning Miss P. The AM board really is a place for support although I have not been around these parts much lately. I need to spend some time reading through some older posts to catch up on things.

While I try to maintain good spirits about this whole HL thing, the damned waiting for results of last week's tests is what I am not dealing with very well. I left a v-mail with my oncologist's nurse earlier this afternoon but of course have not heard back from them yet. UUUUGHHH!!!! Patience is NOT my strong point. I want answers and stuff NOW!!! lol

So, no real update to the update thread yet other than to touch base and express a touch of frustration with still not knowing what HL stage I'm in. I do know this cancer crap has to go and soon!

Keep me in your thoughts everybody. I decided today that no matter where AMG is held in 2014.... I will be back. New war stories to share over drinks and dinner with the gang, but remember I am a lightweight when it comes to booze. They don't call me two hit Lucy for nothing.

I'm sorry to read about your diagnosis. I've known a few people with this and all are now doing great. I should point out that they are all HIV neg (as far as I know), so I'm not sure how much that may complicate things.

I asked one friend, who is 37, whether he had any symptoms-- feeling tired and all that. He said nothing but the swollen nodes. It made me think for someone HIV negative, swollen nodes would set off immediate alarm bells. But, for those with HIV, swollen nodes would probably be dismissed as being caused by HIV. Well, until they got really enlarged and spreading.

How much is HIV associated with causing lymphoma? Is it a big factor, or thought that you would have probably gotten lymphoma, even if you were neg? I will keep you in my thoughts. And, this is a good reminder for people to not dismiss things as just normal with HIV.

How much is HIV associated with causing lymphoma? Is it a big factor, or thought that you would have probably gotten lymphoma, even if you were neg? I will keep you in my thoughts. And, this is a good reminder for people to not dismiss things as just normal with HIV.

Hi Ted! Good to hear from you.

When I saw my ID Specialist on October 1st he took one look at the swollen area (right side armpit) and expressed urgency in getting into see a surgeon to move forward with a biopsy. He knew that a needle aspiration would not be the best way to go in order to obtain a definitive answer so immediately had his nurse setup an appointment with a surgeon. I tell you, this guy (my ID Spec) is amazingly good! He told me that HIV+ people, more specifically, HIV+ people who have less than stellar CD4 counts are at a greater risk of developing lymphoma. Further, the fact that my CD4 count had been slightly decreasing over the past year had him concerned.

Who knows if I would have gotten HL if I were HIV neg. My hunch is that I would not have. It would only be speculation to venture any guess regarding that. I do know that this lump in my armpit area was not there until mid September but in the few months leading up to it, I would from time to time feel some tightness in my neck glands.... not sure that is indicative of lymphoma but is a symptom I remember. I also had a night here and there where I would wake up in the middle of the night with mild night sweats. These sweats were nowhere nearly as severe as those experienced back in 2010 when I was really sick with AIDS.

As far as feeling tired, I really didn't notice any abnormal fatigue really. Its become the 'new norm' to get tired easily therefore I cant say that was a red flag in my case. I would say that being HIV+ does not necessarily portend a diagnosis of NHL (non Hodgkin lymphoma) or HL (Hodgkin lymphoma) is imminent. Those of us who are HIV+ should be aware that we are at risk of developing such however. It bites man!..... just another dreadful thing to add to our list of possible health complications to watch out for.

A swollen lymph node, in and of itself, is nothing to be alarmed by.... its when the swelling persists and the node feels somewhat hard an effort to find out more should be made. I plan to ask my ID Spec more about the link between HIV and HL when I see him next week and will share any information I get.

Perhaps today I will get the results from my PET and know exactly how far my HL has progressed. This waiting for results is a bit nerve-racking.

My treatments start Tuesday! I just got the call from my oncologist's nurse but the thing is, Dr Lu is on vacation and she (my nurse) is not able to convey the results of the test due to protocol. Sooooo... I am thinking of getting a copy of my PET results tomorrow from the Medical Center for my personal review. I HATE WATING!!!

Believe me, I am not happy about not being told what stage this HL is in yet... but that's just the way its going to be. She cant disclose and my doctor is away. The silver lining here is that I can get going with these treatments ASAP! This is the latest and thanks again for those of you who are sending me good vibes. I feel them and appreciate you taking a moment to do so. Sending you my best in return.

I had an interesting Friday. There is an 'orientation' that most oncologist offices recommend for people who are about to start chemo. My overview was provided by the pharmacist who works in that particular office. It was very informative and actually put me at ease somewhat. Needless to say, I am still a bit nervous about the possible side effects but thankful they have already written the prescription for some really good anti nausea medication.

I ventured over a bit early to have lunch at my favorite Thai place and do a little shopping before heading to the Medical Center for my appointment. I was in a store and what do you know... look up and there is Dr Lu (my oncologist). We chatted for a while about my upcoming appointment. He reiterated that his week of 'vacation' was not time off for fun but rather time needed to take care of some personal things. He is one of the new doctors that has come to the cancer treatment center and evidently he has just recently moved here within the past month. I really like this guy!

My PET and CT scans were done over a week ago so I dropped by the imaging center and picked up copies of my reports. Maybe its just me but I had to see just what it was that they found. My read is that I may be at stage 2 but of course will know for sure early next week when I start treatment. The CT picked up a small bit of scaring in my lungs but I honestly think that may be possibly the result of the Bronchoscopy done in 2010 when I was being diagnosed with AIDS. That nasty PCP Pneumonia sure made for some ugly chest x-rays as I recall. The hospital did go in and 'clip' a small sample from my lung for tests in March of 2010.

My liver, gallbladder, pancreas, adrenals, left kidney showed 'unremarkable' (which is a good sign). Mild adenopathy in my upper abdomen around the aorta/cava which is inline with early stages of HL. The report shows that I have Diverticulosis which is really no big deal (compared to the AIDS and cancer). Sooooo... somewhat relieved and now armed with many questions for my Onc on Tuesday.

I bet most of his patients don't go out of the way to obtain copies of their scan results but hey, I am not the typical patient. One thing I learned from good ole' AM is that we OWN OUR HEALTH!

The good is that my first treatment was administered yesterday and as of 4:00AM today I show no major side effects from it. Atripla stayed down last night and this first cup of coffee this morning sure tastes good!

The bad news is that my Hodgkin Lymphoma is in a more advanced stage than I thought (AND hoped) it would be. The fact that my PET and CT scans clearly show 4 distinct and separate areas where HL is setting up house puts me in the advanced category. Those wonderful night sweats put me in a class B. The cancer has not ventured into any vital organs yet but has indications of concentration in more spots than just my right side armpit area. The official diagnosis is now Classical Hodgkin Lymphoma Stage 3b (mixed cellularity type).

My projected treatment schedule is now 6 to 8 cycles of ABVD with an interim PET scan when we get three months into this. I have opted to have a port 'installed' to make chemo administration go smoother and also to save veins in my arms that I actually need as part of daily life. The oncologist said that usually with patients receiving more than 4 treatments, a HIGH risk of vein collapse exists with these chemo drugs.

My personal outlook is still optimistic but yes, the fact that I have stage 3 HL was not the best news of the day. Actually, I was not totally surprised because I was feeling tightness in my neck and had developed a horrible pain in my lower back. Thanks again for the support and e-mails, calls, and such. We need to pay attention to our bodies when they are trying to tell us something. Please go get checked out if you have any suspected weird swelling or pain. Don't wait!

Good to hear you started treatment and so far are tolerating it well. You have a amazing attitude regarding this and sharing your experience really can help us learn about this ( since lymphoma is common with hiv positive people).

Hey I forgot to mention. This may be something to put in your back pocket. The Fred Hutchinson Cancer Research Center is conducting treatment studies for people with hiv and lymphoma. They are doing stem cell transplants with the intention to both cure the lymphoma and cure the HIV also. Your definitely not at the stem cell transplant stage but it's always good to be aware of some research you may qualify for. I can provide you with the link to their site if your interested.

Thanks for the update and I hope you continued success in your treatment

I've been thinking about you quite often and sending positive energy your way. luvs and hugs.

Greg

Thanks my friend! I did better today than I would have thought actually. My brother has been here and we got out and about for a short while this morning. A good long nap this afternoon and still no nausea. Of course that 'Emend' and other anti nausea drugs are keeping that chemo from making me sick.

Best wishes.I really admire your strength and outlook.Please check back in here when you can and let us know how you are.

britchickx

Having a spot of tea with graham crackers now! I do have a bit of bruising in the veins where they took blood and where they inserted that IV for chemo. That will clear up in a few days! I can already feel less tightness in my neck and as I have read from others who go through chemo, this first treatment does a LOT of cancer killing. Those little bastards are meeting their demise inside my body right now!

Good to hear you started treatment and so far are tolerating it well. You have a amazing attitude regarding this and sharing your experience really can help us learn about this ( since lymphoma is common with hiv positive people).

Hey I forgot to mention. This may be something to put in your back pocket. The Fred Hutchinson Cancer Research Center is conducting treatment studies for people with hiv and lymphoma. They are doing stem cell transplants with the intention to both cure the lymphoma and cure the HIV also. Your definitely not at the stem cell transplant stage but it's always good to be aware of some research you may qualify for. I can provide you with the link to their site if your interested.

Thanks for the update and I hope you continued success in your treatment

Thanks for the message. I think its not just an attitude about cancer, HIV, or any one thing that may or may not happen to me personally. My strength (or should I say view) regarding life in general is derived partially from my metaphysical beliefs. That of course is not a discussion I would go into here on AM. Further, attitude is a choice is it not? Would having a pity party really serve me well? I think not. It works for me and not only as an approach to life threatening disease but also in my day to day existence.

Just me... that's not to say cancer is something to not take seriously or not research. I have discussed the stem cell transplant with my doctor already. That as you know would be an option if the chemo fails and other treatment options have been exhausted. Thanks for your input! I do appreciate your post.

Atripla and Bleomycin may not 'play well together'. I noticed a dark reddish streak on my skin last night after I took my Atripla. This was at the site where chemo had been administered through IV and on the other arm where the Bleo test was done. Bleomycin is the only one of the four chemo drugs that they did a 'prick' test for. It can, in some instances, cause hives, shortness of breath, and a few other fun fun things.

The fact that this redness occurred not only at the IV site but also where they did that test tells me Bleo is not liking something I took. It was like a 4 inch streak running up my arm where that vein is! The Atripla (specifically Tenofovir) is what I am thinking may be the reason for this. The reaction was minor and there was no pain or itching associated with it but I will contact my doc today to discuss what I observed.

Other than that, I am three days out from that first treatment of chemo and doing better than I thought I would be. There is still a bit of a metallic taste in my mouth and my hair is holding root for now.

My second treatment went so much better than the first. I was able to use the port for this one and they had no problems accessing it which certainly made things go smoothly. My only side affect so far is extreme fatigue and the usual chemo heartburn the many folks get. Feeling a bit more energetic now so perhaps the two naps today made a difference.

Thanks again for the support, e-mails, and phone conversations. You guys are the best! Still have my hair for now, but I understand it may thin out after the 3rd or 4th treatment. I would love for it to come back in red.

I went in for my interim PET scan on Tuesday (3/4). In January I completed my third cycle of ABVD chemo and my Onc wanted to wait six weeks before doing the PET. Honestly, I truly hoped/expected to see that tumors would have decreased in size. The results that came back showed no evidence of Lymphoma cancer whatsoever. At first I thought there may be some kind of mistake but after viewing the images with my doctor, I saw for myself the scan that showed no evidence of cancer.

I agree this looks great but of course I still need to complete three additional cycles of ABVD. The doc wants me to do a pulmonary function test on Monday to see how things are going with my lungs. We may drop the Bleo if the results show some issues. Bleomycin (aka Bleo) can cause major lung damage. That PCP Pneumonia I had back in 2010 wreaked enough havoc on my lungs quite frankly and if there is a way to proceed successfully without it, then I am all for 'dropping it'.

Thanks Zach! The news is still sinking in a day later. Chemo is not fun but I will say its worth going through if the result is becoming cancer free. I really will celebrate in late spring when the treatments are done. Of course subsequent scans will always add a bit of anxiety but I do expect to be in remission for YEARS!